Overcoming Roadblocks to Chase My Dreams With SMA
For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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How new SMA treatments are turning hope into reality
Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug…
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Adapting to My NJ Feeding Tube
Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ…
Finding Somewhere Between Burnout and Balance
I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my…
I Am Here, and That Is Enough
As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet…
Facing New Challenges Gives Me Clarity and Control Over My Life
For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or…
Staying Organized Helps Me Simplify Life With SMA
Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye”…
Reflecting on a Year Gone By Brings Me Gratitude
Like many others at the turn of the year, I enjoy setting aside some time to reflect on the past 365 days. I’ve never been the goal-setting type at the start…
Cherishing Togetherness During the Holidays
Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the…
Being Rare Is All I’ve Ever Known
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this.
Living With SMA Taught Me to Think Efficiently
Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher…
Managing My Health Can Be Exhausting, and That’s OK
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me.
Glam for the Scan: How One Outfit Changed Everything
While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t…
